Random Quotes

"My will shall shape the future. Whether I fail or succeed shall be no man's doing but my own. I am the force; I can clear any obstacle before me or I can be lost in the maze. My choice; my responsibility; win or lose, only I hold the key to my destiny."

I realize I haven't posted here in a very long time. I thought I'd give an update from this years annual checkup.

There is a "spot" on Asher's spine. That is all I was told at the annual clinic with Asher there, and Scott wasn't there. So, after leaving, Asher asked, "Can this spot turn into cancer?!" I then realized I asked NO questions. I scheduled an appointment to see the oncologist to ask my questions!!

Here are the answers / information:

(1) The spot is around 2mm
(2) It has actually been there since February 2011, tiny, and much more obvious in November 2011, and doesn't 'appear' to have changed, although it is 'brightest' on the January 2015 scan. The oncologist went back and looked at scans to find its beginning (after I requested this one-on-one meeting) - no radiologist took note of it until this year.
(3) Oncologist has no idea what it is
- (a) it 'could' be calcium deposit
- (b) it could be a blood vessel, he says, but it is only in three or four frames of the vertical scan so I don't agree, and it looks nothing like the other ones higher up
- (c) it isn't Meningioma since he didn't have radiation
- (d) he doesn't think it is cancer since it isn't more nodular and it would be faster growing
- (e) he cannot say that it won't turn into cancer (I did not tell Asher this, since this was the only question Asher)
(4) MRI with contrast is best to see it, which is what we did
- (a) cannot do PET scan or Spectroscopy as it is too small
- (b) doesn't want to do a spinal tap because he believes it won't find anything and why bother putting him through anesthesia
- (c) doesn't want to do a biopsy as it might damage nerves
- (d) doesn't want surgery (which at this point would be the only way to find out what it is, and even then the surgeon might not see it)
(5) since it 'appears' that it has not changed since last year, staying on 12 month MRI schedule is ordered
(6) symptoms of growth would be associated nerve pain in back at L1 and L2 and appropriate radiating pain
(7) what else....no one is concerned....cept me....I'm his mother

I have told Asher it is not cancer.

I find it almost ironic that the last post-treatment blog post I made, 4 years post, was the one where this spot should have been noticed / noted / discussed.

Asher is 8 years out of treatment!! He is in 6th grade at a middle school. He has an IEP and has Math resource which replaces social studies. (They want to take that math resource away....the issue I have with it is that he isn't getting help for his current math, it is math taught in its own level, for all the kids in it (from what I understand). Asher says he does homework too, but I don't understand when. I do want him to have that help.) He struggles with reading and language arts, and organization, and keeping up, and responsibility....and gets grades around C's....he never does homework at home and I have no idea what is going on. He says he does it in resource (I think). It has been a struggle. I wish I saw him working at home....writing and reading. He just wants video games. He is so smart at math and logic and building and computers. At school they built a tower out of spaghetti and he won! (Suppose he may take after me, the structural engineer in the family....and a lover of architecture (there is a famous American architect named Asher Benjamin, and I knew that when I named him lol).) He takes PE for his specials class and the other is computer generated and offered music the first half of the year and this half he is in some computer class that he says they do typing. He is a moody child. Very very moody. Hardly ever happy or smiling. Very unlike the way I remember him when he was young. I suppose this is puberty. I miss him holding my hand or hugging me or telling me he loves me. But, I know he does inside himself.

As for me, a mom of a brain tumor survivor, I am doing pretty well. I am still a stay-at-home-mom. I can't imagine trying to have a job again. It seems every week, I get at least one kid that needs to stay home sick, and/or I get a call from school that I have to pick a kid up. I did start a hobby, though. I breed cats. Exotic shorthair, exotic longhair, and Persian cats. Boy does it allow me to nurture babies again. Kittens are amazing. And, I make people happy with their new life-long companion. I still see my psychologist, yes. She is my crutch. She is trying to get me to be less dependent on her and be stronger emotionally, on my own. But I still see her 3-4 times a month. I'm selfish and want to see her. I also still don't handle stress very well. She would say I don't have enough support people in place, but I actually do. I have a lot of friends (mostly online - Facebook). But, some stuff I 'can't' talk to them about. I still take medication and I might for the rest of my life. I've had depression pretty much my whole life, and it was just the traumas/triggers in my life that would put me into a really bad place. The medication helps. I still struggle with the MRIs and going to the hospital and clinics. A few years ago I choked on chicken at Wendy's right before going to clinic. I was okay, but had to go by ambulance to the hospital and have a scope done to remove it. Poor Asher....his dad was in town, thankfully, and picked him up at Wendy's and onto clinic they went. My anxiety gets so strong. Even this year, like the previous, I sit in the cafeteria at the hospital during the MRI scan and have a good cry. At least I'm not in the bathroom puking, like I did a year or so before even that. The PTSD is strong at the hospital. Even now just typing this, and thinking about that, brings tears to my eyes. Am I worried about this spot? Yes. How much will it affect my daily life? I don't know.

We went to clinic yesterday. Asher's MRI was "crystal clear." His hearing is normal. All blood tests were normal. Everything is just fine. Asher has graduated to MRIs every six months, now, instead of every four months. They also said because he didn't have disease in his spine originally, that the spine no longer needs to be scanned. Last year they told me this, and then I asked if anyone relapsed in the spine and not the brain, and if I am remembering correctly, the answer was yes, and she was five years out. So we continued scanning the spine each time last year. Well, I'll just say, I'm not ready for 6 month intervals, but we carry on....

I think I would always have done everything I could to save my son from the cancer in his brain.

But, when I look back, as we are now just past Asher doubling the age he was when he was diagnosed with cancer, I question how everything happened in front of me. Around me. As if I was just a bystander. When I think back now, it is as if I am watching a movie of myself, .... and I judge myself, now.

Why is that mom just sitting there, not talking, numb, not having an opinion, not fighting, not asking questions, not doing research, not trying to understand technical terms? Why is that mom crying? Why isn't that mom crying? Why is she crying, ALL THE TIME? Why is she angry, losing patience, and not down on her knees praying? Why did it take almost five months for that mom to stand up, learn some medical terms, learn some medical procedures, and fight for her son's healing?

And....

Why, now, do I start to lose my breath at just a second of a memory of that time? Why do my eyes swell up with tears, as I gasp for breath, and hold my breath, and then tell myself to let my breath out s-l-o-w-l-y, as the tears slowly drop off my cheeks?

I'm still struggling, with the thoughts and feelings....mostly quietly, alone, and not sure where to go with all that I feel....

To be honest, I don't write much here anymore, because I feel so damn bad. So many kids have died. NOTHING I feel matters, because Regina died, Charlie died, Alexa died, Henry died, Michael died, Jace, Stash, Coleman, .....

So, I carry on.

I nod my head, just ever so slightly when the doctors look at me and say, "He looks sooooo good."

I remember when he looked so good, when he was 1, and 2, and then three, and then, I guess he wasn't. BUT WHEN WAS THAT? When did he start to not look so good? When did this cancer start growing?

That is weird that I wonder this? But I do. I don't want to get too comfortable . I want to be the FIRST to SEE the monster IF it comes back.... But last April and May his left eye turned inwards and I wasn't the first to acknowledge it. So, either I won't be the first because I see him every day and won't see the obvious, or IT will be too small to see an effect, so the MRI will be the first to see it....

That's why we go, to the MRI as often as we do. They (the doctors?) figure if IT comes back, we need to catch is early, because recurrence is often deadly, deadlier than initial diagnosis....

I wasn't reminded of these facts today, at clinic. Dr. Etzl wasn't there. It was a group of all women, today. Asher was looking forward to seeing Dr. Etzl, though, and I saw the disappointment, in his face, that he wasn't there today. But, he participated pretty well, and was proud to show off his balance and strength. It was also the first time he had his glasses, at clinic. Apparently, the full report of his damaged retinas hadn't made it to the whole team before today.

So, I guess I wasn't reminded, verbally, today, that cancer can remain invisible and cancer can do what IT wants WHEN it wants to, but I know it, in my heart, and in my mind. And, that is what is hard about going to clinic. Because I have to hold my breath, and try not to remember, to keep the tears from falling, because, it doesn't matter. IT is the past, and IT isn't coming back, and I can give myself a break, because I did the best I could, back then. No one is going to write a movie about me, and I won't have to watch it any time soon, so I need to turn my mind off and go to bed and pretend it didn't happen so I can FEEL happier tomorrow....

Asher-B was born 1/03
Asher-B was diagnosed with cancer on 5/06, at 3 1/4 years old
Asher-B is the strongest he has ever been on 10/09, at 6 1/2 years old

And, today, I still struggle to say, "THANK YOU GOD," because of something in me, about that, and my faith, makes it weird. Thinking about it though, I do whisper it, "Thank you...."

Someone asked me, in a private guestbook entry to this blog, about my faith, and how my beliefs got me through.... Have you ever tried to WRITE what you believe? Share your faith? I'm working on it, and maybe I can share, some day....

Asher does look remarkably well. I was told today, by the neurosurgeon's assistant (OK, I really need to know what to call her....I'll just call her Katie), that THIS is the best she has ever seen Asher. She also said, "It is almost like you can't tell we were even in there," while looking at the brain MRI. Apparently the brain is healing itself, well, ....?

Oh, and one last thing, they highly recommend the H1N1 vaccination, for Asher, for our whole family....

So, that's it, until four months from now....we carry on....we try to find REAL MEANING in life as we carry on....it can't really be as simple as simple is, can it?

Yesterday I took Asher to his clinic visit with his oncologist and the neurosurgeon's asst. He finally waved to them, talked to them, smiled in their presence, and did everything he was asked. It was smooth and fast.

The doctor said Asher looks well. When asked to walk toe to heal along a very straight path, he could do it. He did wobble, but he could do it.

The only thing that slowed the 30 minute appointment down was the discussion about his eyes. No one knows why he has retinal scarring. They believe it was not from the craniotomy (he had bleeding in the tumor bed only), nor increased cranial pressure (which I was told he never had), nor the infection in the back of his head, and they have never seen anything like this. Do the chemo drugs cause it; they don't know. Did he have bleeding in his brain, maybe when his platelets were low; they don't know (but they don't think so). They have no answers. They do want to pass the information/pictures along to the Head Start study to see if anyone else has seen this in the participants in the clinical trial.

I was warned, although he looks so good three years out from diagnosis, two years out from treatment, even kids that have had radiation relapse at 4, 5, or 6 years out.

All clear, but still, I feel like I have been punched in the gut. In a good way....I guess....maybe....sounds weird I suppose.

Asher fell asleep only 10 minutes away from the hospital today, at 3:15pm. He was exhausted. When I woke him, though, he was in a descent mood. On the way out of the elevator at the parking garage, before clinic, Asher said, "Mom, I'm dizzy. I want another MRI today." I kind of wondered if he knew what he was talking about. Like if he knew WHY he gets MRIs. I've had a difficult time explaining to him, in the past. I've never really wanted to explain everything to him, because I didn't want to scare him. He knows little. He remembers little. He seems to not have questions. I've told him he has MRIs to make sure there are no more tumors, bad spots, in his head to give him headaches. Anyway, I actually think he might have felt a little dizzy because he was very nervous about clinic.

Dr. Etzl actually met with us today, instead of his partner. Been awhile since Dr. Etzl has seen Asher. Although Asher knows him and he has a wonderful way with Asher, Asher still refused to talk to him or barely look at him. He wouldn't walk for him, or jump for him, or squeeze his fingers, or push on his hands with his feet, or anything. He was terrified. Nervous. Dr. Etzl even said to Asher, while he was about to listen to his heart and lungs, "Are you as nervous as you look?" He was. He was rigid, looking down. I feel so bad when I see Asher feel the way he feels when he goes to clinic. Everyone is so nice to him. He never gets poked. He never gets bad news. But, it is like what he went through, 2-3 years ago, changed him forever....

When school started, a kid at school asked him about his scar and he said, "The doctors did something naughty to my head." Well, every clinic appointment, I tell him, "These doctors didn't cause your tumor or your head owie. They fixed it. They made you healthy. I am so grateful to them. I would be grateful to you if you would answer their silly questions." I told him this today, as well. I was hopeful, but it didn't change the way he was at clinic today.

Dr. Etzl showed me all the blood test results....everything normal, including kidney function, liver function, bone marrow function, and thyroid function. I don't have a copy, otherwise I would put the results here. I am going to try to get a copy, as I forgot.

Dr. Etzl reminded me what Asher's treatment goal was. To cure him, rid the body of Medulloblastoma, without radiation. He told me that there is still no evidence (proof?) that the treatment Asher had cures Medulloblastoma. He said, "Even when radiation is done right at the cerebellum, AND whole brain radiation, there is still only a 75% cure rate."

I'm not a numbers person. I never have been. I've seen this thing called Medulloblastoma blast into the lives of many kids, and it treats each one differently. Statistics? Why do they matter?

I guess I'm a scientist, to a degree. I was a engineer, a problem solver. I get why there are clinical trials, and statistics. There's a need to know what the BEST treatment is. What the BEST outcome can be, as far as living life. As far as the many children they must cure of this nasty beast. That's why we gave Asher that poison, because we wanted our child to have the best chance of beating cancer. The scar on the back of his head is a constant reminder, to me, every morning, as I brush Asher's hair while he eats his breakfast (helping it to dry faster).

But, sometimes I feel Dr. Etzl is waiting, and warning. Waiting for the cancer to come back, and warning me it will.

Or, he is simply telling me something I already know....Asher is doing so well, beyond their expectations, and I should feel blessed. (And, I do. How do I even put it into words how I feel about Asher's state of health right now?)

I've always respected the straightforward, honest, direct surgeons and doctors. I'm straightforward, honest, and direct. So, I need that in return. Especially as an engineer.

In case I haven't said it before, I don't believe it will be back. And, I'm saying this as Asher's mom, not as an engineer. Screw science.

Brain - Full Report: Midline suboccipital craniotomy changes are noted. Parenchymal {pertaining to the parenchyma (the key elements of an organ essential to its functioning, as distinct from the capsule that encompasses it and other supporting structures) of an organ} volume loss is seen in the cerebellar hemispheres. No focus of enhancement to suggest recurrent tumor is seen. The ventricles are normal in size and position. No enhancing intracranial lesions are present. Mild gliosis (scars in the central nervous system) is present in the posterior fossa (a small space in the skull, found near the brain stem and cerebellum) adjacent to the resection site.

Spine - Impression: Normal MRI of the cervical, thoracic and lumbar spine. No evidence of metastatic disease (in other words, no spread of cancer from brain to spine).

In speaking with Asher about going to clinic this week, he would respond that he would be going to get a picture of his brain. I reminded him that we did that last month but clinic had been post-poned to January. I told him he goes back for his brain picture in March, two months away.

So, Asher went to clinic today at 2:30pm. It was his 9-month post-transplant brain tumor clinic, but they had asked us to reschedule last month to this month, so he is 10-month post-transplant, however, no tests were performed today so the discussion was regarding December 2007 tests/scans.

The transplant doctor came by the room and said hi to Asher. She said she didn't recognize him, but she recognized me. Then she carried him off to go see a transplant nurse-practitioner that cared for Asher most of the time during his transplant, but she had already gone over to the hospital. She just kept saying he looked so good.

It was a pretty low-key appointment. The clinical nurse, oncologist, and social worker were there. The oncologist checked Asher, although, Asher was being uncooperative today. It was weird, because when we got there he said, "Where's Dr. Etzl?" with excitement. But, as soon as the doctor came in the room, Asher wouldn't look at him, have eye contact what-so-ever, and he wouldn't even squeeze the doctor's fingers with his hands when asked. They asked me a few times, "Does he talk at home? Does he interact normally?" etc.

The oncologist asked Asher (and me) questions such as:

Do you ever see 2 of anything? (not sure)
Has he had any infections? (no)
Has he had any fevers? (yes on 12/24/07 105.5)
Has he complained of any headaches where you could tell he was in pain? (no)
How's his memory? (great - he remembers things from today and even months ago)

They said his kidney is functioning fine and all counts/levels were within normal.

We should be hearing within the next week or so regarding the schedule for the March tests....hearing, MRI (brain and spine), and heart or something (I forget, I think ECHO).

When I asked about when they will scan his spine again (they didn't do it in Dec '07), they said they will do it in March. Since he did not have radiation, and on very rare cases a recurrence could begin in the spine, they will scan his spine.

And, remember, because Asher did not have radiation, he continues MRIs every 3 months the second year post-treatment, just like the first year post-treatment.

The clinical nurse ended the appointment by saying, "It was a very tough protocol he followed. He looks really good."

It was, tough, and we are very thankful, to the entire medical staff at PCH, for getting Asher to a healthy state. I do believe without medicine, we wouldn't be where we are today.

However, I also believe "that it was not Asher's time to go." I think the second craniotomy was miraculous. I think healing from the biggest infection / head wound involved miraculous healing. It was also the break he needed in the protocol to be strong for the transplant. It wouldn't matter to me what anyone else says, this is what I believe.

There are memories of crying in those clinic rooms....to smile today felt good. I will allow myself this happiness.

Oh, and I remembered one more thing....I seem to remember a little piece of this appointment as time goes on here....I was asked if Asher was going on a Make A Wish trip. I said no. Then I was asked, "Don't you believe in it?" Then I sat there with confusion, in my mind and heart, and I stumbled with my words, "I guess, not for us." I guess I always thought Make A Wish was for really sick kids. Asher isn't sick. Then I was told, "Well, if you change your mind, it would be a nice vacation." I don't think I'll change my mind, though. Maybe it is just because of our family size....and a trip would everyone would be far too stressful. Also, Asher didn't understand cancer, and he didn't / doesn't understand what a wish is. I took Asher to Georgia in September '07 and he had fun and I have memories with him and he still talks about the trip, however, Scott doesn't have those memories with us. I don't know....

So, clinic was last week (9/26). We hadn't seen the brain tumor team since February! Asher had been under the care of the transplant team since March.

The oncologist briefly looked at Asher....ears, eyes, mouth, tummy. Then when I talked about him still walking on his tip toes most of the time, he wanted to see him run down the hallway. He said he ran flat on his feet, fast, and steady. His gate is so close to normal, really no deficiet. They said the only time there would be a problem with walking on the tiptoes is if Asher couldn't get his feet flat at all. And, he can. So, they say not to worry about it. He doesn't need a PT consult.

The oncologist asked about fevers, infections, bloody gums, etc., and the only "Yes" in there is bloody gums and they only bleed when we brush his teeth, and only in certain spots. Still need to get him in to the dentist for a checkup.

Bactrim can be discontinued now (although, we were told it could be earlier, so we had already stopped it) and the acyclovir can now be stopped (so we have). SO NO MORE MEDS!!

The neurologist wasn't there, but his assistant was. She showed us a few screens of the MRI on the computer screen, explaining the white stuff and the black stuff and saying there is no evidence of tumor recurrence. There are no voids and he is not banned from any sports, but to really consider discouraging him (or never encouraging him) to play football. There are just so many injuries in football....

She was talking about something about the removal of something and something....nice, huh? I can't even repeat anything she said....something about removing 2 things (bone??) to get access to the brain/tumor during the craniotomy....anyway....

She was also telling me to let Asher's hair grow out so it will mostly cover the scar. Scar tissue is very sensitive and can easily get sunburned, so, he needs a big rimmed hat, sunscreen on the scar every three hours, or hair to cover it. So, what did I do when I got Asher home, I gave him a haircut. I will be letting his hair grow some, but not a lot. We will use sunscreen and a hat when he is outside.

Asher looks good to them.

They did not draw blood at all. I was very surprised. They didn't even check levels of anything....

There is a new social worker, to our surprise. In the end, she talked to me for maybe 3 minutes to say I should call the school district and see about getting Asher in for some testing because if he is delayed to begin kindergarten in the fall of 2008, they are responsible to teach him, even though they did away with their preschool program. And, it is free. She said to tell them he had a lot of hospitalization (176 days) with aggressive chemotherapy and he just had a difficult year and we're not sure if he is delayed. So....I will call the district....not sure when....trying to put my thoughts together on this.

Other than walking (and running) barefoot on his tiptoes, my other concern is his mood swings. This could be a lengthy post in itself, and I don't have time right now, but in the end, they said Asher is probably exibiting normal 4-year-old behavior, but if he continues, and he starts doing it with other children and other adults, then we should consult a child psycologist....

Also, they didn't say anything about him needing a nap each day, but I have actually done away with the naps (mainly because Alexa doesn't need them and to get Asher to sleep, I have to lay down with him....gets complicated with 4 little ones all on different schedules). Asher sleeps from about 7:30pm-6:30am when he doesn't have a nap. He does get tired/moody in the afternoon....still think he is tired and this is his way of acting out when he is tired. Unless there are other reasons for his moods/behavior/aggression....

I kind of felt like I left that appointment wondering what just happened, if anything. It was weird. Not sure how to explain it. Maybe that's a normal feeling after 16 months of lots of medical stuff....and then nothing. Guess some would say we're back to normal life now. Next appointment will be in 3 months, so end of December!

Asher's clinic appointment today went well. I took him alone, just him and me. Clinic was practically emtpy this morning. The room we ended up in, had not one other family in that hallway. Asher's weight was 16.8kg (37.1lbs) clothed, but no shoes.

The first thing that happened was a man came in to draw blood. He poked Asher with a small needle in his left arm (what is that called? crook of the arm?). Before he did it, I explained to Asher what would happen, I held his right hand, and the he watched the man take 3 large tubes of blood and he was pretty much fine with it.

Then Asher played really well while the transplant doctor talked to me about his test results from June. She went over many things. Results from tests 6/21:
CHEST XRAY - normal
MRI - CLEAR SCAN of both brain and spine
RBC 3.91
CREATININE 0.4 (0.5-0.9) (Kidney)
ALT 48 (2-41) (Liver - this was elevated back during March too and still is a bit)
FERRITIN 1874 (18-370) (Iron - this is hugely elevated due to the transfusions he has received - we are to continue to not give him vitamins with iron and slowly, over time, this level should come down on its own)

There are more results of more tests, but those are the main ones.

Then she said, "You and Scott are smart people. Asher is healthy and doing well, right now, but his cancer could come back...." That really is all it takes....this lovely reminder that she needs to tell me about....as if my heart doesn't know it....my eyes swell with tears and I am trying to hold by crying. I do okay, I wave her off, she stops talking about it. She continues on with telling me the future tests that will be done to follow up on Asher, MRIs, and blood tests and other tests to track long term effects of the chemotherapy.

They will test his hormones (testosterone), thyroid, .... annually. His thyroid could go either way, hyperthyroidism or hypothyroidism.

We talked a little about what fertility issues Asher might have as a grown man. Basically chemotherapy would reduce sperm count, but not the health of his sperm. At least that is what she told me. I guess when he is old enough, and ready to want to start his own family, he would get a workup done of his hormones and his sperm. Sometimes I think it is almost 'weird' to discuss this since he is only 4, but it was just something I wanted to kinda know about now as I remember when we 'signed him up' for chemo, fertility issues were noted as effected by chemo. I didn't want to know more then, but I did today.

He will still be taking Acyclovir, 2x a day, for another 3 months, and she is supposed to get back to me on if Asher still needs to take the Bactrim.

Next clinic will be in September and we will see the brain tumor team again. I guess we will also have checkups and followups with the transplant team, separate from the brain tumor team, as the chemo given in March, right prior to his stem cell rescue, have certain long term effects, I guess.

The MRI schedule will be as follows:June 2007 & September 2007 & December 2007
March 2008 & June 2008 & September 2008 & December 2008
March 2009 & July 2009 & November 2009
March 2010 & September 2010
March 2011 & continuing annually (i.e. March 2012, March 2013, March 2014, etc.)

We can also expect these tests (whatever is needed to followup on Asher's health and whatever Head Start III calls for since he is in a clinical trial):
Echocardiogram at 1 year (March 2008) and annually thereafter.
Neuropsych in September 2008, March 2010, September 2011
Charted weight and height (similar to what a pediatrician would do) at 1 year (March 2008) and annually thereafter.
Hearing test at 1 year (March 2008) and annually thereafter.Antibody titers to check for reimmunization - check at 1 year (March 2008)

Speaking of immunizations, Alexa will need to wait for her chicken pox vaccine until March 2009 (when she is 5) and Aubree and Andrew's vaccines will have to be post-poned or variations given, for instance Andrew's polio vaccine (at 2months I think), so as to not expose Asher.

I talked to the doctor about Asher's occasional leg pains and walking on his tip toes and she is going to ask for a consult with PT to evaluate Asher. It will mean me needing to bring him back to the hospital, but I don't want something to go unnoticed if he actual has a problem with his legs and feet.

Asher is going down to 500 fluids a night now, starting Saturday night. They will deliver all 14 bags Friday night. I think this is our LAST home health delivery, but not totally sure about that.

He will still be taking Acyclovir, 2x a day, and Bactrim, 2 days a week, twice on those days.

Asher's appetite is still down from when he initially came home, but he seems to be eating OK. Sometimes he will have a little snack of fruit or something and then say, "No thank you" to dinner (like he did last night!).

Asher's hair isn't growing as fast as I thought it would. In fact, I'm not sure it grew much at all in the last two weeks. It is okay; I like it to be the length it is anyway, especially for the summer.

Asher still needs a 2 hour nap each day. We just can't let him go without it. However, if Daddy is home, forget it, he won't nap. He naps just fine for me though. All 4 of us go to sleep, the 3 kids and me, around 2:30-3pm. Yesterday, on the way to the clinic visit, around 1:30pm, while I was stuck in 2mph traffic due to a bad accident, Asher fell asleep. He had to be woken up when I go to clinic and he wasn't too happy about that. They won't let us come in the morning though because those appointments are for children who are having problems. At least we are almost done going to bi-weekly clinic visits.

Not sure when we'll take Asher to clinic again. Right now we don't have a scheduled date. Two more weeks till his MRI. He will have a large blood draw that day too for lots of blood tests for Day +100, as well as a chest xray to check his organs, also, just a required thing for Day +100. 2 1/2 weeks until his Broviac comes out. Time is flying and we just enjoy each day.

Asher's oncologist just filled out the Cbr paperwork for the DTP program on 6/5 and the transplant coordinator faxed it the morning of 6/6. A guy from Cbr, in charge of new accounts, called me this morning to ask how it was coming and I told him it was just faxed yesterday; he said he will be calling me as soon as he gets it on his desk. I am feeling good about it and think Andrew's cord blood will be an accepted for Asher in the DTP program. Until I have the kit in my hands though, Andrew must stay inside. The "kit" to collect the cord blood is actually sent to me and I have to bring it to labor & delivery when I go into labor. I'm 32 weeks tomorrow. The earliest any of my kids were born was 36 weeks. So, not much time left.

"Collection of the cord blood takes place shortly after birth in both vaginal and cesarean (c-section) deliveries. It's done using a specific kit that parents must order ahead of time from their chosen cord-blood bank.

After a vaginal delivery, the umbilical cord is clamped on both sides and cut. In most cases, an experienced obstetrician or nurse collects the cord blood before the placenta is delivered. One side of the umbilical cord is unclamped, and a small tube is passed into the umbilical vein to collect the blood. After blood has been collected from the cord, needles are placed on the side of the surface of the placenta that was connected to the fetus to collect more blood and cells from the large blood vessels that fed the fetus."

"Clamping the umbilical cord too soon after birth may increase the amount of collected blood, but it could cause the baby to have a lower blood volume and possible anemia soon after birth."

Asher went to clinic yesterday. He weighed 17.3kg, up from 17.0kg which was pretty consistent through April.

We are going to go with 750mL of fluids at night now, over 10-12 hours, down from 1000 bags (although we were stopping them early, he was probably still getting around 850mL). Then in about 2 weeks we'll go down to 500.

We are dropping the Prevacid since it is for tummy issues and I don't think Asher has any. Acyclovir goes for 6 months though, so got some time on that one yet. Still doing Bactrim Tuesdays and Wednesdays, and I think that is till Day +100 but I forgot to ask on that one.

I am going to call and schedule surgery for Asher to have his Broviac out for the week following his next MRI (6/21), so week of June 25th. They won't let me do it the same day as his MRI because they (not me) fear the MRI could show recurrence.... Just want to get that done before July hits as we're thinking Andrew could be born anytime in July. Also, sooner the better, to let Asher get back to his life, swimming included. He deserves to enjoy our pool this summer. He has always loved to swim since he was a baby. Today the pool is done (the reconstruction) and is being filled with water as I type this. He was so excited this morning and before the girls were awake he and I walked around the pool. He keeps talking about getting his catheter out so he can go in the pool. I told him it will be around the time Andrew is born that he will get to jump in the water! I think I will have tears then....it is like he has his '4-year-old life' back but then he has these tubes hanging out of him....I can't wait till they are out and not a constant reminder of this past year.

Anyway....

He is doing well. His fingernails are all healing and growing more normal now. His jumping is improving, as is his running. He may even need a haircut in a few weeks!

Before clinic I had the kids at the pediatrician for the girls' well-checkups (3 years for Alexa and 1 year for Aubree). It was one year ago this week that we had Asher looked at by this pediatrician and I think she knew what the MRI would show before she even told us she was going to order an MRI. I think back, about how she handled that, and didn't freak us out....and how she called and checked on us a lot after we did know the results....

She was observing Asher quite a lot yesterday. I noticed her doing that and I said I was so amazed how Asher had come out of this past year with very little to no deficits. She said she is amazed at how well his mind is working (she used a different term, like brain-something), how balanced and coordinated he was, how much he had grown, and how good he looked. She said she couldn't believe it had been a year already but that she was sure it had just been an awful year and couldn't imagine really what it all had been like for us....there was hesitation in her speaking, and I could feel her thinking back to that week last year....she even said she remembered how he was last year and he is so different now.

I was really happy with how careful the kids' pediatrician is too. No one warned me or told me that the girls' vaccines need to be post-poned or anything like that. For instance, Alexa couldn't get her chicken pox vaccine because it is a live virus vaccine (if I said that right) and Asher could get quite sick, so she will get it at 4 years or 5 years old since it is a 3-5 years vaccine.

Every day this week it has been nothing but THERE....the memories, the pain....if I'm not playing with Asher or near him I feel the pain. When I'm with him I can celebrate his victory. I'm always rubbing his head...it is WEIRD to MISS his baldness. I kinda do. The bald head...there was something about it. It wasn't a sign of his illness or anything like what missing eyelashes meant to me....

So anyway....a flood of memories this week, of feelings, and of prayer. I found myself praying to God last night after thinking about what the transplant doctor said...."if Asher has a recurrence we will do radiation"...I know...I know...that has always hung over me. I'm so afraid of radiation and I ask God to what? NEVER let Asher's cancer come back? SURE! But really, I'm the realistic person here, and I just ask that IF it comes back, to keep it away till we can do radiation at an older age. I'm just so afraid of it.

There, got that outta me. We can just go on with life and act like there is NO CANCER in our life! So there, Cancer, go away! Let us have some peace and enjoy the upcoming new life in our family! I want to give birth to a baby and not feel like my world is going to fall apart.

I saw a little boy at clinic today with his mom. I almost didn't recognize him. He had leukemia, at 2, and he looks so big now. Last we saw him was at the end of September when he was DONE with treatment but got a line infection (in his catheter). She remembered how sick Asher was back then. Anyway, it is good to see the kids post-treatment. There's something about it. Hope. Faith. Something. He's the same adorable boy I remember, just taller, and with hair! The mom said to me, "OH! You're expecting!" Yeah, you can't miss it now. I have a good size 7 month belly. She said, "What, you thought you didn't get to enjoy the last one so you'll have another one?" I said, "I guess that is what God was thinking!"

And....before I forget....I talked to the transplant doctor about Andrew's cord blood....it was a GOOD conversation, one where I didn't feel horrible after having it. I had done a bunch of reading and anyway, it was just GOOD to have the doctor be honest with me and not just say, "Of course you should bank it!" She actually didn't even say that, and I told her it surprised me! Both my OB and the kids' pediatrician said that, "Yes, you should bank it!" I'm still trying to decide what is 'right' and hoping God gives me a sign, and soon. Some programs require registration by 35 weeks and I'm 30 weeks tomorrow.

Went to clinic this afternoon. Doc says Asher looks just fine. In fact, she said he looks wonderful, gorgeous, with his hair coming in.

I asked her if it would be possible to have the Broviac taken out in outpatient surgery on June 21st, after his MRI. She said it was a nice idea, putting him out one time, but the concern would be if the MRI showed something.... There I was, again, being so optimistic that that hadn't really occured to me. But, I think she is going to talk to the Tumor Team, Asher's oncologist, and see what he thinks.

Asher will start Bactrum, two times a week, starting this weekend. He's still taking Acyclovir two times a day and Prevacid one time and 1000mL of fluids at night.

We are going to clinic appointments every two weeks now. I'm thrilled about that!

Was nice to see the tumor team social worker stop in as well as the tumor team clinic nurse stop in. It was a very fast in and out though today, which was nice, especially since I had the girls in the appointment this week.

Also, two other things....(1) Asher's fingernails are starting to "shed" again (just like they did last November). I clipped them to try to discourage Asher from pulling them off too early. So far he only ripped one in half and it didn't bleed. (2) Asher can jump, two times in a row, without holding onto anything. So great to see his physical strength coming back full steam!

Everything rising ON ITS OWN now!!! I was so worried his ANC was dropping but I was wrong. So, now I am of the opinion that Asher is tired because (1) he plays/runs hard and (2) the nightly fluids are causing him to have to urinate a lot and he is old enough to want to hold it so he tries/does sometimes and then it disturbs his sleep. Scott and I are both getting up at night to check/change diapers too because we got tired of washing his sheets every day from overflowed Huggies. I'll just keep giving him naps if need be and know that he is doing great!

Asher's MRI was from 4pm-5:30pm today. Asher was so anxious this morning, and even last night. He ASKED to go to the hospital! The delays are normal/expected but still make for long days. Asher did fine going in. We saw the MRI machine together, while standing in the hallway, and the anesthesiologist put him out via an injection through his tube of his Broviac while he was in the hallway. Asher woke up fast and irritable (was already awake when they came to get me from surgery waiting). That's always the hardest part. This time I asked for Zofran because he kept saying, "Owie owie" and he said he was going to be sick. He didn't get sick. He has some episodes of crying out in the van on the way home, but all was okay in the end. Finally home by 8pm....seemed everywhere we tried to go on the highway or the side-roads, there was an accident. Hopefully we will have the MRI results no later than Friday.

Thank you to those that sent thoughts, prayers, good wishes....meant a lot to me, especially this morning when I couldn't fall back to sleep after 3:30am. I must now go to bed and hope for a better night sleep than I had the past two nights.